I was about 14 when I discovered strange-looking marks on my body. I went to my family doctor who sent me to see a skin specialist. I was told I had Von Recklinghausen's disease (now known as neurofibromatosis). I remember looking up the condition in the library because nobody knew much about it then.
Basically I knew I'd get an itch from these spots. I also knew that as I got older, I would get more and more and that they might become bigger.
Over the years, I have also suffered from depression, which in some ways may be linked to my having NF. I'm the eldest in my family, and two other siblings have NF as well. My mother had it too, and she was covered in nodules when she died.
One of the biggest changes came about in 1983, when I saw a letter in a newspaper written by someone who was running in a marathon for the Neurofibromatosis Association of Northern Ireland. This was the first time I had seen a mention of the condition in the papers. I sent the letter writer a £5 postal order and ran home with excitement, knowing that someone else had what I had.
Before this, it was like there was a curse on my family. I felt isolated and fearful of the future but now there was a glimmer of hope - if not for me, for others with the condition. Soon after this, I got a huge envelope of information on NF from the English neurofibromatosis care group, which has been a great support.
Neurofibromatosis is identified by the presence of nodules on the trunk and neck of the body. It can start to explode at puberty, as in my case, or during pregnancy or the menopause. In 1989 and 1991, chromosome 17 and 22 were identified as carrying the neuro fibromatosis genes. There are now known to be at least 10 different types of neurofibromatosis.
I have type 1, which means that tumours or growths of fibrous tissues grow on the nerve endings all over my body. The condition varies hugely, and I am quite lucky in that I have no major disfigurement due to NF, although my body is covered with these nodules. However, other people are not so lucky and they can have huge growths which disfigure their bodies, coupled with other problems. In general, the nodules are not painful but they can be very itchy.
I have taken antihistamines from time to time to ease the itch. You can, of course, have the nodules removed, and some people have to have them surgically removed because they obstruct certain organs. I'm lucky in this too because I have never had to have any removed.
However, even if you do have nodules removed, you can never take the root out because it runs into nerve tissue. It's a bit like picking a Brussels sprout; some of it remains on the stem.
Another aspect of having NF is that you may have to be very careful about the type of clothing you wear and the washing powders you use, as the least thing can cause irritation. I always give my clothes an extra rinse after washing them, and I avoid softeners, most washing powders and soaps. I always use cotton sheets and underwear.
The biggest problem with neurofibromatosis is that it is still not very well known. It is more common than cystic fibrosis, yet people can have it for years without realising it. This becomes more of a problem if they are going to start a family and might pass it on unknowingly.
Neurofibromatosis is recognisable by the presence of five or more cafe au lait marks on the body, freckling of the skin under the armpits or in the groin and pigmentation in the eye (known as lisch nodules, which are only detectable with a split lamp). Children can also have learning difficulties associated with it, which they can overcome with help.
Having NF has affected my life but really, you have to get on with things. I can suffer from an explosion of nodules which gets me down for a while and leaves me with an irritating itch. The genetic nature of the condition is also stressful, but I am single so I didn't have to deal with whether I would pass it on or not. Some people can be very bitter about this aspect.
About 80 per cent of those who have NF are like me, with slight symptoms, but 20 per cent have severe problems and they can spend their life finding the right specialists to treat them. This is the real tragedy of the condition, and it can involve all medical specialities.
In conversation with Sylvia Thompson
The Neurofibromatosis Association of Ireland can be contacted on 01-8726338